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Made me smile when I opened the blinds. The Adler and I flower corner. (We’ll see if any of the seeds we planted grow??) We went to bed late again due to his pain and man I wish I could sleep in. I have that adult thing where I wake up earlier than I need to because my body just does. I’ve looked up Florida driving routes and some places to stop along the way possibly. We talked with Adler’s therapist about this trip yesterday and we called it the “No pain no gain road trip” because if he had no pain we sure as hell wouldn’t be going. Sarcasm is heavy with he and I. And I thought about that as I lay here……no pain…..what would that be like??? He’s barely gotten to experience life without it. What would Adler’s life be like with no pain??? What would my life be like??? How different it would be. But instead how different and difficult it became because of it. This isn’t a “making memories” road trip. Not on purpose though I’m sure we will. This is to take Adler for his second evaluation at Nemours Children’s Hospital in Orlando for their month long daily pediatric pain management program. This isn’t for fun though we may have a little bit wrapped in there somewhere, somehow. No. This is for pain. Chronic pain. That Adler has dealt with for most of his existence. So. I’m gonna lay here a bit longer and look at our flowers and then get up and get this shit show going. 🅰️⚓🌈💙

by | Jun 5, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

Made me smile when I opened the blinds. The Adler and I flower corner. (We’ll see if any of the seeds we planted grow??) We went to bed late again due to his pain and man I wish I could sleep in. I have that adult thing where I wake up earlier than I need to because my body just does. I’ve looked up Florida driving routes and some places to stop along the way possibly. We talked with Adler’s therapist about this trip yesterday and we called it the “No pain no gain road trip” because if he had no pain we sure as hell wouldn’t be going. Sarcasm is heavy with he and I. And I thought about that as I lay here……no pain…..what would that be like??? He’s barely gotten to experience life without it. What would Adler’s life be like with no pain??? What would my life be like??? How different it would be. But instead how different and difficult it became because of it. This isn’t a “making memories” road trip. Not on purpose though I’m sure we will. This is to take Adler for his second evaluation at Nemours Children’s Hospital in Orlando for their month long daily pediatric pain management program. This isn’t for fun though we may have a little bit wrapped in there somewhere, somehow. No. This is for pain. Chronic pain. That Adler has dealt with for most of his existence. So. I’m gonna lay here a bit longer and look at our flowers and then get up and get this shit show going. 🅰️⚓🌈💙

by | Jun 5, 2021 | From The Road

from Life with our little Super Hero Adler Bear https://ift.tt/3plZmye

He did a couple and then went back inside. I finished up but left a few small ones for him to plant later tonight. Besides Adler being very fair skinned, the drug he was on really messed with his skin. 100% dermatological side effects. Besides nasty rashes, being in the sun gives him what resembles sun poisoning. At Disney it was really bad. Welted and blistered and it was sore and itchy. Thanks chemo! So. He did what he could and went back inside. He was pretty excited for some flowers!! Thanks Ray Carris for rhe flower boxes. We love them. 💘 💘💘💘

by | Jun 4, 2021 | Updates From the Road

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP
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